Category: Alzheimer’s

I’m so thrilled that this little (very personal) essay is taking on a life of its own! I was informed yesterday by the editor of Hippocampus Magazine, Donna Talarico, that “Wash Me Clean” is one of her six choices for nominees this year. Literary journals and small presses are all allowed to nominate six pieces published in in the last year. You can read my fellow nominees’ work here: http://www.hippocampusmagazine.com/2013/12/hippocampus-announces-pushcart-nominees-for-2013/ All excellent personal stories.

It’s an honor to be among all the other nominees–writers light years beyond me in talent and craft skills. Even so, it’s a blessing and more than anything I just want my grandmother to be proud of her girl.

Share this:

Like this:

An essay about caring for my grandmother during her Alzheimer’s illness. It’s about the way we forget who our loved ones were before they got sick. Please go to Hippocampus Magazine to read it! Thank you!

Like this:

I was 20 years old, a full-time college student, and minutes away from meeting Terry, one of the greatest friends I would ever have. I pulled up to his upper middle-class suburban neighborhood nestled against the foothills on the West side of Denver and was thinking how much I needed this job—the pay was double my part-time hourly rate at the convenience store and this job sounded much more fulfilling than mopping floors, working a cash register and working for ol’ lady Myrna who was late to relieve me every night at 11 PM when my shift was over.

I was nervous about interviewing for a job so unlike any job I’d applied for before. All I knew from my best friend, who worked with Terry’s wife, was that he was in a wheelchair and they desperately needed help. Terry and Penny were hiring someone who would clean, cook, take care of the yard, and do physical therapy exercises with Terry. What did they expect from me? What was it like to work with a disabled person? I was getting my degree in Psychology and wanted to work in a helping profession someday anyway and this was a perfect chance to help someone who needed me.

As I walked to the front door, I thought about the phone conversation I had with Terry the night before; he was kind, intelligent and easy to talk to. When I rang his doorbell, Terry came to the door riding his scooter and welcomed me in. We sized each other up pretty quickly and knew instinctively the situation was going to work out well.

Terry was in his early forties, balding, with a full beard and mustache sporting a bit of gray. His voice was soft, but deep and his whole face was smiling—eyes twinkling. Sometimes he’d laugh so softly, you’d have to listen very carefully and look in his eyes to tell if he was really laughing. He was wearing sporty slacks and a golf shirt. His scooter-like wheelchair had three wheels and was powered by a car-sized battery with a quiet whirr wherever he went. On the handlebars of the scooter hung a basket with all his accessories—a portable phone, a folding multi-tool, and his wallet. We began to get to know each other and joked around and after a half an hour, he hired me. That day was a new beginning in my life—I spent the next 6 years by Terry’s side.

Terry was 28 years old when he was diagnosed with Multiple Sclerosis. When Terry tried to re-enlist in the Air Force, he failed his physical. They claimed he failed the hearing test—he knows now it was the “move your leg around in a circle” test that he really failed. He said his leg was supposed to move smoothly, but the movement was staggered during the test. Months later, he began falling for no reason. Terry went to a doctor. After many tests, they gave him the diagnosis. Having MS meant never having full control over his body, watching his ability to walk fade away, and wondering some days whether he would have the physical strength to pull himself out of bed. Terry lost his military career, lost his 1st marriage, and later, his career in the auto industry, each loss a direct result of his illness—and all in the prime of his life.

Terry had been in a wheelchair for about eight years when I met him. I never sensed anger or bitterness about his loss of a healthy body—instead he possessed a joy for life that is rare in most people. Part of that joy was having Penny in his life—his best friend and partner. She really loved him and knew of his illness when she married him, but married him anyway. They were a great team and working in this home day to day offered me a new and profound perspective on life.

Terry treated me more like a team-mate or family, and not so much like an employee. Every day I’d get to work and say, “What are we doing today, Homey?”

“Well, Bones,” he’d say while he pulled out his list, “Today we are going to the grocery store and then going to make Rice Krispy treats. Tomorrow is laundry and mowing the lawn.”

One day when I asked what we were going to do. He said, ”Going to look at a BMW I want to buy.” So, off we’d go to buy a black M5. He couldn’t drive, so when I’d drive it he’d say, “Step on it woman! This car needs to be driven fast!”

“Okay!” I’d yell over the wind blowing through the car, “But you are paying for my speeding ticket if I get one!” I haven’t driven a fast beast of a car since, but when I drove for Terry it was to make him feel like he was driving himself. He’d say, “Man, I miss the freedom of just getting in my car and going wherever I want. I miss driving in the New Mexico desert.” I couldn’t give him the desert or his independence, but I gave him my youth and all the excitement and hope for the future that it brings.

Other days we spent our days working on the house, Fleetwood Mac’s Big Love pumping out Terry’s huge speakers and expensive stereo system, talking and learning about each other’s history and dreams, waiting for Penny to come home from work so that we could eat the dinner I had prepared with Terry’s guidance. Terry was the mind and I was the body. He verbally walked me through fixing the closet door, changing the oil in the snow blower, hooking up new stereo components, or repairing the sprinkler head in the lawn. My favorite thing was working in the yard. Terry would sip his iced tea on the porch and tap his foot to Robbie Robertson playing over the outside speakers while I pulled weeds or planted in the garden.

When we weren’t working, we were philosophizing about life and love and death. I was learning about Abraham Maslow and Peak Experiences in school and we’d talk about Maslow and Jung and any other theorists we found relevant to our emotional and spiritual growth. I read books aloud to him after doing physical therapy exercises, or we fell into a trance listening to a new CD we had discovered earlier that week—maybe Loreena McKennitt or The Blessing. Terry introduced me, a culturally sheltered young woman, to many things in life I had never experienced. Before Terry, the only Asian food I’d ever eaten was La Choy in a can. He and Penny took me out for Vietnamese and I ate rice noodles and learned to love cilantro and lettuce with my egg rolls. And he and Penny took me to my first performance, Phantom of the Opera, and later Miss Saigon.

Our Fridays were spent visiting art and nature museums, state parks, and quaint little shops looking for books, incense, or enlightenment of some sort. We drove to Boulder and watched street performers on the Pearl Street Mall and ate cheese fondue at my favorite restaurant. Those were the happiest days in my life. Through this life I began to live in the present moment—the here and now. I didn’t worry about school, or making ends meet—I only lived in the glorious moment of now—Terry did, too.

Terry showed me the world—more importantly, he showed me myself. He was the first person that ever demonstrated compassion and total acceptance of me on a daily basis. He would tell me I was one of the most passionate people he’d ever met, that I was good-hearted, and when I felt bad about things, he’d look at me with love in his eyes and tell me he understood me and tell me I was a good person. He had a way of pointing out the truth to me without making me feel defensive. I became more self-aware. He was a mirror, reflecting my true, wonderful self. Soon, I began to see myself through Terry’s eyes and although I battled with a fragile self-esteem, each day I grew into a more loving, compassionate, aware, and self-assured person. Terry and I gave each other hope for the future and he gave me a love for life. I had intended on helping him that day I walked up to his door. Instead, he gave a much bigger gift to a young woman fighting so hard to figure out life—a love for the world and a love of myself.

Originally written in 1999 and years later published in The Human Touch Journal at University of Colorado Denver Anschutz Medical Campus

Share this:

Like this:

My earliest memory of her—rocking me in her arms, singing You are My Sunshine, patting my butt to the rhythm of the rocking—her velvety hands, smelling of Avon hand cream, caressing me, patting me, loving me. Later, whenever I visited her, I remember her always showering me with gifts: perfect outfits she spent hours sewing, little girl jewelry, modeling clay, personalized books with me as the leading character, and a doll that crawled. My step-mother was fed up with how many dolls I received from her, but my grandmother bought them for me anyway. She loved me. I was the center of her universe. As a child, a teen, and then a young adult, I knew—when I was in her presence—the world was just right and safe and good.

I miss her. I miss calling her when I have news. Sometimes I make up conversations in my mind. “Hi, Gram. Guess what? Remember how much my eyes have been bothering me? Well, I found out that I have severe dry eye. All these years, I never knew that’s what it was.” She’d say, “Oh, no. That’s just horrible. You poor thing. I hope they can figure out what to do to help your eyes.”

Or maybe I want to tell her about someone I’m dating. But, I really don’t date anymore, so I guess that’s one conversation I don’t have to make up in my head. Maybe I just want to cry to her and say, “Gram, the last 6 years have been so hard…I miss having you to lean on. I miss you taking care of me and I’m tired of taking care of you. I love you, but the burden of your house and finances and the fights trying to get you in the shower and taking care of Grandpa and getting you on Medicaid and finding a nursing home—it’s just all too much. I’m tired and I just want you to hold me and tell me everything is going to be okay, like you used to.”

I guess, technically speaking, I could drive over to the nursing home she’s in now and have any one of these conversations with her—well, maybe not the one about taking care of her. She wouldn’t understand because she doesn’t know she’s sick. But certainly we could have a chat about the dry eyes. She’d say exactly what I know she would. Yet, somehow it’s not the same because, one minute later, she won’t remember the conversation we just had. So, the comfort I used to get, and the best friend she used to be, are gone. But, I still tell her things anyway. It makes her happy to hear about my life and it gives me a little glimmer of how things used to be.

They call Alzheimer’s “The Long Good-Bye”. It’s true. You say good-bye a little at a time. You miss your loved one and then feel guilty because he or she is sitting in front of you. I’m lucky, though—my Gram still knows who I am. She still lights up when I walk into the room and brags about me to her family and friends. She’s told me the story of the day I was born more times than my mother has. She always tells the tale with her arms cradled like she’s rocking me to sleep. “You were born and I just felt like you were mine. I knew you were mine. God gave you to me and I had meaning in my life like I never had before. All the nuns in the hospital thought you were my baby. You were my angel and you were all that I thought about. I hated to leave you with your parents. “

And who’s to blame her for not wanting to leave me with my parents? When I was born, my mom had just turned 17; my father, 19. They were kids who had no idea what to do with a baby. It must have been hard for Gram to leave me, knowing my life was not going to be the calm, comfortable life she’d give me if she could. She worried about me constantly. My parents were dreadfully poor, so Gram would try to help as much as she could. She bought fans because our trailer was too hot and bought me clothes, toys, and blankets. She had a way of stepping in and filling in the gaps—not just when I was a child, but for most of my life. She protected me. She cherished me. I constantly felt her love.

Gram always tells me, “You are my number one!” and holds up her index finger to punctuate the point. I’ve never felt more loved by anyone. Luckily, that hasn’t changed since she got sick. Thank goodness she’s still “there” enough to know she loves me.

Gram is happy now in the beautiful nursing home I chose for her. She was depressed at first and cried every day. She wanted to go home, even though she couldn’t always articulate that sentiment. I felt horrible guilt when I wasn’t there with her every day. But, now she has a friend, Charlotte, who wears funny hats and hobbles around using her walker. Charlotte doesn’t talk much, but breaks out into song in response to anything you say to her. If Gram says to me, “Cathy, your dog is so cute!” Charlotte starts singing, “How much is that doggie in the window?” Then Gram lights up and starts singing, too. When they aren’t singing, they laugh at each other’s senseless jokes for hours. They are so crazy about each other that they aren’t even allowed to sit together at meals because they never shut up long enough to eat.

Sometimes I visit and we hang out in her room. I lie down across the bed while she sits in her wheelchair and we fantasize about what trips we want to take—sometimes it’s to places she’s been or sometimes places she’ll never see, like Hawaii or Europe. Instead of letting her feel sad and trapped because she can’t just hop in her car and drive, I initiate imaginary trips. We ate lunch on the sidewalk of a French cafe, chatting and people-watching. We drove the English countryside, looking at the rolling hills and farmers with their sheep. We traveled across Colorado and New Mexico in a fast car—she’s driving of course, with her foot to the floor.

Sadly, though, some days when I go visit her, she’s so enamored with Charlotte that she forgets my dog and I are even there. Talking to me, she’ll turn her head to hear something Charlotte has said. The next thing I know, she’s rolling down the hall in her wheelchair, laughing and looking up at Charlotte as they head to Charlotte’s room to eat candy and tell their secrets to one another. I try to tell myself that it’s wonderful she’s so happy now and that she no longer relies on me to make her happy all the time, but later I cry because it hurts to not be “number one” today.

Several months ago she told me that we were soul mates. “Yes,” I said, “I know,” with a nod and a smile. I’m not sure how I know, but I know she and I are connected spiritually—always have been, always will be. I know I’ll be as close to her in death as I have been in life. I feel such a sweet comfort in that knowing.

I don’t think I’ll have any regrets when she dies—no wishing I had done this or said that. I’ve said everything I need to say. I’ve loved as much as I can. I’ve washed her hair in the sink like she used to wash mine as a child. I’ve curled her hair hundreds of times, just the way she likes it, and told her how beautiful she is—as she did with me when I was a kid. I’ve bathed her, cooked her favorite meals, and listened to her stories, much as she bathed me, baked my favorite cherry cheesecake, and listened to my stories about boys. I just hope I’ve been able to return the favor and give her the sense that life is just right and safe and good.

Originally published at A Long Story Short and as “Missing Her” in The Human Touch Journal at University of Colorado Denver Anschutz Medical Campus